I have written about this many times in the past, but I’ve been corresponding with someone over e-mail that said something to me that was upsetting. Here is the blurb from the e-mail that got to me…..
“Immediately after the stroke, I basically said to anyone exactly what I thought, I was far from polite. I would call that my Filter, it was my lack of holding back an inappropriate comment. I became more filtered as time went, sort of like how a child becomes more filtered with age, so I am fairly filtered right now with my comments. I am honest but not offensive. I explain this because many arguments are moments when it doesn’t do any good to be unfiltered. Honesty is one thing, but sometimes it is most productive in an argument to respond, or not respond, a certain way.”
This lack of filter is a neurological condition that everyone I’ve ever met with a brain injury has experienced. It’s called Pseudobulbar Affect. Look it up. When I was lying in a hospital bed 85% dead, I was told that I was being mean to some visitors. The months following my stroke when I was about 60% dead, I was frequently told that I was saying inappropriate things, and that I needed to change the way that I interact with people. A few years after the stroke when I had improved to about 45% deadness, some of the things that I said during that time were brought up to me as examples of how mean I was and why some people didn’t want to come see me. I was told these things by the people closest to me that were supposed to love and support me the most. I was told these things were a problem with ME and not a result of the absolutely horrible, devastating medical condition that had just taken over my entire life.
This meanness, this “lack of filter,” this honesty, this saying horrible, racist things like I did, this inappropriate laughing or crying is a neurological condition that CANNOT BE CONTROLLED. It’s the weirdest thing in the world and utterly impossible for someone who has never had a brain injury to understand. Just impossible. To try to explain to someone that you actually can’t control the words that come out of your mouth is completely incomprehensible to most people, I understand that. What I don’t understand is that no one in my life at the time took a few minutes to read a GD article or two in order to try to understand why I was acting like this. How selfish of me to think that at the absolute lowest, darkest, and most vulnerable point of my life that anyone around me would try to increase their knowledge and learn how to better deal with my behavior that I COULD NOT CONTROL.
If you’ve stumbled onto this blog, it’s probably because you yourself or someone you know and love had a stroke. Please read about PBA and – you won’t understand it, but you can educate yourself about it. The last two abstracts I have linked mentions that damage to the cerebellum in and of itself can cause de-regulation of emotions, so I have both issues, lucky me!!